Tuesday, January 31, 2012

Exciting Day for the CF World!

This is such huge news. Today marks a momentous change in the way we view treatment for CF. The first drug ever to target the underlying problem in CF has been approved by the FDA. And while it doesn't address our specific type of mutation, it gives enormous hope as a similar drug is in the works.

No comments:

Post a Comment

About Me

I am only in my mid 20's but can already tell God has great things planned for me. I have been working as a youth minister for 4 years in my home parish of St. John the Baptist. As if leading teens to Christ isn't hard enough, I am a busy mom blessed with 4 children. My oldest son Cayden, daughter Trinity and youngest son Cooper have a genetic disease, cystic fibrosis. They both inspire me and have forever changed me. Until there is a cure our family fights with them to defeat this terrible disease. But we praise God for the blessings he has brought to us and for the miracle of Colin, his younger brother. He is healthy! I am a wife to the greatest man, Chris. Everyday he reminds me to live life to its fullest.

***It's also quite normal that all three would be on some form of antibiotic for 10-14 days.

This is my husband Chris. We met nearly a decade ago at a church retreat. I knew I was going to marry him the day I met him (no joke). We immediately fell in love and found that we had nearly everything in common. We started a list of those things and to do this day I still have the list. Ironically, we also both have genetic mutations for cystic fibrosis. When we were married for just 6 short months we went through a house fire. He rebuilt our lives (and a new home) literally from the ground up in just 6 short months. He is my best friend, a wonderful father, and he gets me through the tough days with his wittiness and sense of humor.

Our Boys

Cayden was born in June of 2005. An uneventful birth. To our shock and devastation he was diagnosed with Cystic fibrosis just 3 weeks later. He has only had 1 hospital stay in his short 5 years of life. He would eat spaghetti every day of the week if we let him and he never takes no for an answer. He has the strongest soul of anyone I know.

Colin "CW" short for "Colin William" was born in Jan of 2007. Weighing in at 10 lbs even he tipped the scales (and our hearts). 7 days later we received negative results on a sweat test. After praying much to John Paul the Great, we claim Colin to be a miracle of JPII's intercession. Colin is shy and a follower. He religiously carries 3 silky blankets affectionately called his "blue b's" with him everyone he goes (think Linus from Charlie Brown). He says "my" instead of "I" in all of his sentences. He adores being a little brother.

Cooper is already proving to be a strong-willed young man. Born on April 26th, 2010 Cooper was also diagnosed with CF just two short days after his birth on St. Gianna's feast day (a saint we prayed to during his pregnancy). After a bowel obstruction and 2 enemas, he was able to come home after 7 days in the NICU.

Our Princess

Trinity was born on May 17, 2008. Oddly enough we had already settled on her name way in advance, but she chose to make her entrance into the world on Trinity Sunday. She has taught us much about the Cross. She also was diagnosed with cystic fibrosis at 2 weeks. "Trin, Trin" as we affectionately call her is a drama queen, mama's girl, and ever so charming in the morning. We have never seen any other toddler make quite the mess with food in her hair as she does.